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Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Tuesday, December 19, 2017

Making Patient Pathology Results Available Via The myHR May Not Be That Valuable Without Some Extra Work.

This appeared last week:

Study: Online portals fall short on offering context, explanations for test results

Dec 13, 2017 11:20am
Patients often do online searches to understand test results posted in portals, according to a new study.
Patients can, and often do, access test results and other healthcare information through online portals, but more work could be done to help them understand what the results mean, according to a new study. 
Researchers interviewed 95 patients who had accessed test results through a patient portal between April 2015 and September 2016, according to data published in the Journal of the American Medical Informatics Association. Close to two-thirds (63%) of those interviewed did not receive any additional explanation on the results through the portal. 
Nearly half (46%) then looked online for interpretation of the test results, and 51% discussed the results with friends and family instead of physicians. Patients who were not given an explanation about their test results were more likely to be upset—sometimes even if the results were normal or positive—and more likely to call their physicians for more information. 
Fifty-six percent said they had a negative reaction to their test results due to lack of explanation, compared to 21% of those who had a negative reaction with adequate explanation. 
"Our findings suggest that current patient portals are not designed to present information on test results in a meaningful way," the researchers wrote. "While providing patients with access to their test results via portals is a good start, it is insufficient by itself to meet their needs." 
Patient portals are viewed by clinicians as one of the most useful patient engagement tools, and at some practices an increased use of portals has coincided with decreased appointment wait times. 
But, the researchers said that the results show how portals can continue to evolve and support patients. Providing clear interpretation of test results for patients should be a best practice, and as patients may search for additional information on results even if an explanation is provided, portals can be designed to steer them to reputable online sources. 
More here:
The full paper is found here:
Here is the Abstract:

Patient perceptions of receiving test results via online portals: a mixed-methods study

Journal of the American Medical Informatics Association, ocx140, https://doi.org/10.1093/jamia/ocx140
Published: 12 December 2017

Abstract

Objective

Online portals provide patients with access to their test results, but it is unknown how patients use these tools to manage results and what information is available to promote understanding. We conducted a mixed-methods study to explore patients’ experiences and preferences when accessing their test results via portals.
Materials and Methods
We conducted 95 interviews (13 semistructured and 82 structured) with adults who viewed a test result in their portal between April 2015 and September 2016 at 4 large outpatient clinics in Houston, Texas. Semistructured interviews were coded using content analysis and transformed into quantitative data and integrated with the structured interview data. Descriptive statistics were used to summarize the structured data.
Results
Nearly two-thirds (63%) did not receive any explanatory information or test result interpretation at the time they received the result, and 46% conducted online searches for further information about their result. Patients who received an abnormal result were more likely to experience negative emotions (56% vs 21%; P = .003) and more likely to call their physician (44% vs 15%; P = .002) compared with those who received normal results.
Discussion
Study findings suggest that online portals are not currently designed to present test results to patients in a meaningful way. Patients experienced negative emotions often with abnormal results, but sometimes even with normal results. Simply providing access via portals is insufficient; additional strategies are needed to help patients interpret and manage their online test results.
Conclusion
Given the absence of national guidance, our findings could help strengthen policy and practice in this area and inform innovations that promote patient understanding of test results.

----- End Abstract.
Basically what is being said here is that there are a large number of patients who will be confused, out of their depth and possibly scared by gaining access to their results with are not accompanied with some explanation of what they mean and who to ask if they are confused.
I wonder how the guru’s at the ADHA are planning to address this issue as it is clearly a big one for some patients who are not receiving their results from their clinician face to face! Interestingly the same issue also applies to the NSW e-Health Portal as described in this link:

https://www.opengovasia.com/articles/nsw-health-enhances-its-healthenet-clinical-portal-by-adding-discharge-medication-information-via-my-health-record
David.

8 comments:

Andrew McIntyre said...

That would be my feeling about the automatic relay of pathology to MyEHR. If you Chloride is one unit above the reference range some people would get concerned. Some patients are very knowledgeable about their results and I have no problem with them having them but it needs to be selective and ideally released to the patient by the person who ordered the test or their GP rather than an automated thing.

What about very bad news, like recurrence of a cancer on a CT scan? I would make an appointment to discuss that and its quite concerning that it could get released to a patient without explanation or any support, potentially over a weekend. If I saw that result I would want to line up a review by their surgeon or oncologist so that some plan was in place before they received the news.

The patients that really know about their results would most likely want the atomic data because they can do amazing things with it. Have a look at Optimizing Nutrition for an example of an engineer who has become a nutrition guru to help manage his wife's diabetes.

Like the rest of MyEHR the inclusion of pathology has been done at the simplest most basic level that is ignorant of the effects on workflow and minimizes the benefit to patients while potentially causing real angst and lots of desperate phone calls to GPs about either silly or very serious things. Just because we have had 2 decades of failure doesn't mean we should push out "something" to save face. Maybe the failure needs to be faced and learnt from?

Anonymous said...

Let’s not think in terms of failure, these are exploratory steps, small discoveries in what is a large and complex landscape. Certain options have been explored and we have discovered along the way better options, be it through broader advances in information technologies or a more widespread appreciation of the constraints of the domain.

By changing the language Ethan’s we can defuse a need to ‘stick to ones guns come hell or high water. We can then help the ADHA help others in steering towards other alternatives.

Bruce Farnell said...

Andrew's comment is right on the money.

Just because it can be done does not mean that it should be done. The release of pathology results should be to the individual who ordered them and/or the individual who will explain them to the patient. Bypassing this healthcare provider is a BIG FAIL from a patient safety perspective.

Dr Ian Colclough said...

It saddens me to watch what the ADHA is doing under the guise of progressing digital health in Australia when it is so blatantly obvious they simply do not understand what is the problem they are trying to solve.

tygrus said...

I would suggest a compromise, once the pathology results are ready, MyHR should show a message to the patient for 4 weeks instead of the actual results. A message like "Pathology results have been uploaded. To review these results, please see your doctor/specialist first. Dr XXX ordered these tests."
After the patient has seen the doctor/specialist or 4 weeks had passed then they could be made available to the patient. The doctor/specialist would need to confirm the patient can now see the results when viewing/downloading them or when they see the patient.

How many weeks to delay the results if you don't like the 4 week mentioned above?

Anonymous said...

They believe the problem is the GovHR needs more stuff and lots of it so it becomes useful and suddenly all involved in a Patient journey can manage them from cradle to grave as cheaply and impersonally as possible.

Anonymous said...

Ian, I read you article in PulseIT on the national digital health strategy. Reluctantly I have to agree with you 100% they have completely lost sight of the problem they should be working on, assuming they knew what that was, which I think is now very doubtful.

Anonymous said...

Reading through the AHHA blueprint yesterday things don’t look to predictable for ADHA. They focused on MyHR and a command and control structure. I guess others have picked up advisors ADHA dismissed as excess to requirements.